Wednesday, January 30, 2008

Catching Up

I hate being behind.

I have the feeling I'm going to learn to deal with that a lot this year.

Here's a random hodgepodge of facts, events, and interior decorating.


1. First stay in the hospital since the beginning. He had inpatient chemo on January 24. The 12 hours afterward were the hardest--he threw up twice--but he was up and around when he came home the next day and even went to his friend's house to play that next night.

2. First blood draw at home. This involved the home care nurse coming out and accessing his port. We covered the site with lidocaine cream beforehand and the numbing worked. Jake didn't even flinch.

3. A sea of bald heads in Primary. Two days after Jake went bald, the 11-year-old Scout activity involved the rest of his friends shaving their heads. As I told those boys in Primary Sunday: "Someday, you will be parents. When you are, I want you to remember what you did for Jacob this week. And then you'll know how I feel about it." (There are pictures, just not on my camera. As soon as I get them, I'll post.)

4. I'd expected to write by this time "First radiation treatment." But we were pushed back a couple of days because, the doctor said, of the complexity of the treatment planning. We're now scheduled to begin radiation tomorrow, January 31, at Huntsman. Jake didn't mind. He really doesn't want to wear that mask.


1. During Jake's inpatient chemo treatments, he is administed all 3 drugs in the VAC protocol. It's the "C" that's particularly difficult: cytoxan not only brings on nausea, but it also has a damaging effect on the bladder. Hemorrhaging is a real concern. When Jake goes in for his outpatient chemo, he is first given several hours of IV fluids so they can measure how his body gets rid of them (there's no peeing and flushing in the hospital--everything is measured). Just before the VAC is given, a drug called Mensa is given to help protect the bladder. Then Vincristine is pushed (the 90-second drug that he has every week in outpatient chemo), followed by Dactinomycin (several minutes to push), and then cytoxan goes in over 45 minutes to an hour. When it's finished, Jacob is given more Mensa. Also, the anti-nausea drugs are given before the chemo is started. We skipped Ativan this time, because it didn't work so great, and started with Zofran. He threw up twice, but managed to sleep very well in between the every-two-hours of peeing. (That's a requirement after cytoxan--they want to make sure he isn't bleeding.)

2. Jacob has (had) (will have again) a lot of hair. As measured by the fact that it's still showing up in my dryer's lint release a week after we shaved him.

3. Jacob gained a kilo between our last outpatient and his inpatient visits. Before they sent him home, they gave him a steroid to boost his appetite. He's certainly been eating a lot this weekend.

4. Alveolar Rhabdomyosarcoma is caused by a tiny mistake in Jacob's DNA. We all have mistakes--no one has a perfect strand of DNA--and they don't always switch on or cause problems. But in Jacob's case, two chromosomes switched places and that led to his cells suddenly growing too fast and turning into a tumor.

5. What is Alveolar rhabdomyosarcoma? Let's start at the end. A sarcoma is a tumor of the soft or connective tissues. Rhabdo is specifically in connective tissue. There are two main types of rhabdo: embryonal and alveolar. Embryonal is the most common and found in younger children. Alveolar is less common overall, but more likely to be found in teenagers. Alveolar refers to the way the tumor looks beneath a microscope--with little bubbles like alveoli.

6. The most common location for embryonal rhabdomyosarcoma tumor is the face. That's also the location associated with the most favorable outcome, because you're likely to notice a tumor growing in the face sooner than a tumor growing elsewhere. The later you discover it, the more likely it will have metastasized. However, alveolar rhabdomyosarcoma is not as commonly found in the face. So Jacob's unusual.


Emma and Jacob have switched bedrooms so Jake can be near us for this year. Emma has adapted quite well to being in the basement and sleeping in Jake's loft bed. (We didn't switch beds because, well, Emma's room is the largest bedroom in the house and Jake's is the smallest. Emma had to pare down some of her stuff to fit into Jake's room.) While Jake was in the hospital overnight, I finished decorating his new room. (It just seemed cruel to condemn him to 10 months of pastel walls and a white girly bed.) Emma's bed now has denim slipcovers on the head and footboards. One wall is dark navy and the other walls are Ralph Lauren parchment (or light brown, if you insist.) Our ward humanitarian board made Jacob a quilt with vintage airplanes on one side and handprints of ward members on the other. Bookshelves and books and stuffed animals are all in their new places upstairs and I think we'll do quite nicely.


Matt and Brooklyn said...

I love the idea of a sea of bald heads in Primary! That must have meant a great deal to Jacob, as well as to you. Definitely post a picture when it's available!

Laura A. said...

It's almost as good as a sea of teats :)

Matt and Brooklyn said...

I wanted to write that but I didn't dare. Thanks for the laugh!